"What on earth are we doing here, folks? To try to save a tanking economy, workers were sent back to their jobs much too early, causing again a spike in cases of the virus. I realize that the loss of a paycheck is a major traumatic situation for any breadwinner, but so is the loss of life. Our doctors and nurses are ...

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"Eventually, this thankfully passed. Now, almost three years later, I know that this loss will always be with us. Miriam was beautiful, she was our only girl, she was perfect for our family, and she’s always missing. Still, my memories of being in the hospital are incredibly sad but also peaceful. In part, this is due to the incredible support and love ...

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"In the best of times (and these are certainly not), all patients need advocates all the time; now more than ever, vulnerable patients need them more but don’t have access to them. Vulnerable populations have more at stake when visitors are limited or prohibited. What’s more, vulnerability may be exacerbated due to youth, advanced age, disability, cognitive impairment, illness acuity, language ...

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I’m writing this piece partly to celebrate the release of my new book, How to Be Sick: Your Pocket Companion, and partly, as always, to try and help readers. I thought I would share the challenges that the book covers, adding some comments as I go. Many of the challenges turn out to apply to the restricted lives all of us are leading in light of ...

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"When doctors ignore the evidence showing that a support system doesn’t have to be traditional in order to be effective, that’s not a medical judgment. It’s a personal prejudice that puts singles at serious risk. Classifying patients as married or unmarried when studying the effects of social support undoubtedly makes research easier, with groups determined by a simplistic either-or. But since social ...

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The third week of September is Mitochondrial Disease Awareness Week: a time to fundraise, light up buildings in green, and hold events that highlight mitochondrial disease research and awareness. My family has never heard of mitochondrial disease until 2017, when our newborn daughter, Miriam, tragically died from it at seven weeks old. Our family felt a profound sense of loss and tried out best to participate in awareness and fundraising efforts ...

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“Time is generally the best doctor,” according to the Roman poet Ovid. But these days, in the middle of the pandemic, what doctor has time? Health care professionals already have 29-hour days. In many places, hospitals are at or near capacity because of Covid-19 cases. Some hospitals and staff are functioning in crisis mode; chaos reigns, particularly in areas where the surge came on suddenly.  As a result, clinicians are stretched ...

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"Each morning before the doctors came in for rounds; I’d paint feverishly whatever abstraction came to mind and what evolved from my situation. When I completed my pieces, I felt like I had not only gotten out my frustrations and worry, but also found a place of joy and gratitude. I would put each canvas outside my hospital room, and soon ...

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In cancer language, it’s not unusual for the medical or scientific meaning of a word to be different from the way the same word is understood in everyday language. Sometimes the difference reflects a focus on populations vs. individuals, and in that case, the context in which the term is used is critical. Media reports often add to the confusion by failing to clarify these differences. Here are five frequently used ...

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Ed is not from Kentucky. I believe he told me he is from West Virginia and from a very low-income family. At about 15, he was hit by a car and paralyzed from the waist down. He's now about 30. But for a guy in a wheelchair, he is nothing short of remarkable for what he gets done. He goes everywhere, either by his own strength or by bus, even on ...

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It is a special group, a mish-mash of medical professionals all with a common purpose: Honing the ability to practice medicine in a more empathetic and compassionate manner, which will benefit both the patient and the professional alike. All meet to share viewpoints, share feelings, share the"what might have been." Sessions are first given over to close examinations of selected prose, poetry, art, or music. Reflecting upon what is placed before them, ...

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As a relatively healthy Medicare patient, I do not visit doctors often. I have had digestive issues most of my life — probably from too many antibiotics when I was a child with recurring strep throat, or so I'm told. My husband and I had just returned from living out of state for two months while he was treated with proton therapy for cancer. My stress levels were high. I was not resting well ...

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Embarrassment is a feeling of awkward self-consciousness or shame. It manifests as a sense of discomfort or even foolishness around others. Feeling embarrassed is emotionally painful because it means you feel uncomfortable with yourself. The problem with embarrassment is that it adds a layer of mental suffering to the difficulties you’re already facing with your health. Here are four reasons why those of us who are chronically ill feel embarrassed at ...

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Comical cartoons about medicine and doctors help to alleviate patient fears, make doctors laugh, nurses think, and everyone else involved in the medical field ponder the value of comics. I have been involved in creating medical cartoons for 40+ years and have created custom cartoons for doctors and hospitals. Have you ever looked at a poster in a doctor's office and felt ...

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There is a haze lurking overhead clouding rational thinking. Thoughts wander back to times when my body was unencumbered, and I felt nothing was out of my grasp.  Maybe that was an unrealistic thought, but it is how youth and inexperience protect one from the somewhat harsh realities of growing older. Coming to terms with chronic health conditions is perplexing. There are days when everything goes just right. The sun is ...

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Let’s get right to it: This is an apology letter to frontline clinicians. And a call to action. I’m a patient advocate, and I’ve spent most of the last 20 years fighting for patient- and family-centered care in national laws and regulations, and in local practice. Prioritizing the needs of patients and families above all else. It is meaningful work to which I feel deeply called, and it is hard work ...

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An excerpt from My Beautiful Detour: An Unthinkable Journey from Gutless to Grateful. Managing chronic illness can leave a person susceptible to emotional and mental health issues that can further exacerbate their physical symptoms.  Post-traumatic stress disorder can often accompany managing a physical illness, and often is the ...

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As I age, the probability of acquiring yet another health condition seems to, unfortunately, increase. There's always one test or another that is on my to-do list, be it bloodwork, X-ray, MRI, or maybe a CT scan thrown in for good measure. I comply usually with a sense that it is for the benefit of my health, i.e., to enable my doctors to determine the best mode of treatment for ...

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For many years after I became chronically ill, I blamed myself for failing to recover my health. I told myself: “You get sick; you get better. It’s as simple as that.” As a result of this stubborn attitude, I refused to set limits, even though it would have been a tremendous help, not only in managing my symptoms but in keeping them from flaring. Learning to set limitations I have a background ...

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I was cleaning out the top shelf of my closet — a location where, hypothetically, treasures can be found. I came upon something that was wrapped in a nondescript brown paper bag that smelled oddly of mothballs. I cautiously reached inside and found an heirloom quilt that apparently had been passed down through generations. I had discovered it an estate sale, and now it had finally come to rest in ...

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